Friday, January 29, 2010

Every Breath You Take

I LOVE my pulse oximeter! I'm a big believer that every household with children should own one. It's more valuable than any thermometer. It's what helps me know if Morgan or Ryan are too sick to wait to go to the doctor's and need to go to the ER . Morgan got a fever last week and wasn't acting like her energetic self. I checked her oxygen -- 95%. Not bad but a little lower than her usual 98%. The next day she still had a fever (102) and complaining her tummy hurt. I checked her oxygen -- 90-91%. I knew she was on her way to something bigger than a cold. I took her into the doctor's office. I was told her lungs sounded good but she had a borderline ear infection and to wait to see if she got better before starting antibiotics. That night I checked her oxygen before I went to sleep-- 79% (normal oxygen levels are above 90%). Off to the ER. If it weren't for the pulse ox, she would've been happily sleeping, hypoxic all night. Also, Morgan has been hospitalized 3 times for pneumonia. All picked up by my trusty pulse ox after doctor's visits on the same day.

We got to the ER a little after midnight on Wednesday night. The triage nurse asked me why we were there. I told her Morgan had a fever and oxygen levels below 80%. All of the nurses turned to look at us. They took us right back, hooked her up to oxygen, suctioned her to see if that would help get her oxygen up and sent it to be cultured for the viral panel, and sent us to x-ray. Her x-ray looked like viral pneumonia and her viral panel came back positive for adenovirus and metapneumovirus. Double whammy. 2 viruses and pneumonia.

Wednesday night -- the ER

She was admitted into the children's hospital under the premise of getting her off the oxygen and hopefully home within 24 hours.

Thursday-- Eating well, finally keeping her oxygen tubing on and needing about 1 L of oxygen.

Thursday night--miserable with high fevers--104 (ice packs under arms in picture) and keeps crying, "I'm sick! I'm sick!" Finally get fever down to 102 after Tylenol, Motrin and ice packs.

Friday-- still a little feverish. Not eating or drinking very well so she had to have an IV started (3 pokes). Follow up x-ray to see if any new bacterial infections going on. X-ray unchanged.

Friday night--she fell asleep around midnight and a few minutes later her oxygen started crashing. The nurses and respiratory therapist rushed into her room, increased her oxygen as high as it could go on the nasal cannula. Nothing happened. They put an additional oxygen mask on her. Still low. They deep suctioned her 6x and still low. The ICU doctor came into her room and did an assessment and told us Morgan needed to be moved into the ICU where they could use higher levels of oxygen and give her the additional support she needed.

It was such an awful experience to watch her go into respiratory distress. I think it was even worse than watching her recover from open heart surgery (but that could just be from time and memory loss). I honestly feared I was losing her. She was struggling so hard to breathe -- retracting everywhere and sucking her nostrils in with every breath. It quickly put everything into perspective. There's absolutely nothing worse than watching your child struggle and be so helpless. I felt guilty for ever being frustrated with the challenges that come with having a daughter with Down syndrome. All I could think about was how much I wanted all of those challenges. How much I needed Morgan. How much we ALL needed Morgan. I called Gavin and he came right up to the hospital and gave her a blessing. She was then transferred to the ICU and started on High Flow Nasal Cannula 15L at 100%. Her oxygen came back into the 90% and she was no longer struggling to breathe.

Saturday--They suctioned and poked her all night long. We finally got to sleep around 9 am. This is late Saturday morning. This is how Gavin and I slept with Morgan. She wanted us right next to her all of the time. "Sleep by you?" as she patted the spot next to her on the bed. I loved sleeping right next to her!

Sunday-- Feeling a little better but still not too excited about having visitors.

Sunday Night-- Still in the ICU but back on the regular nasal cannula and doing well.

Monday-- She was moved back to the regular floor in her own private room. A completely different child -- happy and laughing again, talking, eating, enjoying visitors/phone calls and having fun playing with her daddy. She asked Gavin, "We go home?" and when he told her not yet. She said, "Oh man!"

coloring with dad

Loved her doctor's kit from Uncle Scott, Aunt Jolie, and Ryder

Tuesday-- Feeling all better and really wanting to go home, but still needing just a little bit of oxygen -- 0.5 L.

Enjoying grandma's visit

Loved spending the afternoon with her school aide, McKenna

Wednesday--We get to go home!!! She slept through the night without oxygen and was given the okay to go home.

What a crazy week. We went there thinking we'd be home the next day and it quickly turned into a week. Gavin and I switched off every 24 hours who stayed at the hospital. My mom stepped in and took care of all the kids at home. Neighbors and friends brought in dinners. Friends and family sent Morgan balloons, stuffed animals and gifts. But the biggest support came from all of the friends and family that offered to keep Morgan in their thoughts and prayers. I left updates on how Morgan was doing on facebook and was overwhelmed by the comments left by so many friends. I even had one sweet friend who decided to fast for Morgan. It was overwhelming to know so many were fighting this battle with Morgan. I know that it is because of those prayers, fasting and priesthood blessings that Morgan recovered so quickly. Thank you so very much for being there for us!

20 comments:

I'm so sorry you had to do that. I'm sorry Morgan was so sick. It is so scary. I think about loosing Eva every time she goes in for surgery, which is coming up next week, and the thought terrifies me. Yes, I NEED Eva too, even with all of the frustration. I'm happy you are home and you had a wonderful out come. It's these kind of experiences that make us who we are.

I think we were in that exact same room! I know how you must feel although Morgan had a much more complicated case than Roya. Not two weeks have gone by and I've already received my first $4700+ bill from PCMC. Lovely. Hope everyone is happy at home.

Toni--Don't even talk about the hospital bill! I don't wanna know how much we are going to owe for 1 week in the hospital, ER visit, and 2 1/2 days in the ICU. We were planning a family trip to Cancun but looks like it was changed to a trip to the hospital! :)

Adrienne and Carrie--I have a pulse ox because it is part of my job as a home health nurse but you can find a good one for under $100 on amazon.com.

This is Joyce, So glad Morgan is better and you are all home. It is always such a roller coaster experience when their breathing is involved. What a great idea to have your own pulse ox meter. I need to get one of those for Sarah. I love the chocolate milk shake in a soda fountain glass. Such a fun thing for a hospital to do.

I just relived last week as I read your blog. We are so blessed to have Morgan in our family. She is blessed to have such devoted and loving parents. (Also helps that she has a mother that knows when to take her to the hospital.)

WOW! What a cray week for sure. That is so sweet, "sleep by you". My little ones would always say "hold you" not hold me, hold you. So cute What a sweet little girl. So scary but what great blessings you have received. XO

We love our Morgan. We are so glad she is better. Thanks for letting us be a part of her recovery. As awful as it was for her and your family, it was a very special opportunity for us. It was wonderful to be able to teach my kids how much power there is in coming together and praying with real intent. It makes the kids all feel so special that they were able to help in Morgan's recovery. Now that you don't need all those maskes, give her a big ole kiss from Aunt Heidi!

I am soo sorry to hear of the week your family has had!! I can’t imagine the struggle that must have been emotionally and spiritually. I just wanted you to know we love you and your darling family – we too, are happy your sweet Morgan is home where she belongs. A great testimonial of prayer and fasting for you guys.

Wow, that is a long week. I am so sorry you had to end up in the Hospital for a week. I know the stress of the hospital bill must be looming. We are still paying on the one for Sam's week visit although it wasn't as bad as I thought it would be. I am so glad she is home and okay, how scarey. I am totally going to get one of those oxygen things, I think that could of saved her life. What a smart Mom you are to have one of those.

We are so glad that morgan is home and doing well!!! I can't even immagine how scarry it was going through that. Our family had you in our prayers. It was fun having the other kids at zacks party, 5 guys, and playing the Wii we had ba great time. Let us know if you need help with anything!

wow! what a scary experience to have to watch your baby struggle to breath! I loved what you said about it all. I am glad she is doing better and you can all get back to life. How sweet of her school aide to come! I hope Bree has someone like that one day!

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We quickly filled our home with 6 beautiful children--3 boys and 3 girls. This blog is about our adventures, memories, travels, accomplishments, frustrations, traditions, chaos and hopefully some laughter. But it's also about my journey of being a mother to a daughter with Down syndrome and the gift that she is to our family! This is our story . . .